You are currently browsing the tag archive for the ‘birthday’ tag.

It was my “birthday week” the week before last. I had a good week! I was careful to rest and eat nothing different (like cake) as i planned to go out into town on the Sunday to meet some friends. It really felt like a whole week of celebrations though, with cards, messages and presents trickling in day by day (unopened of course!). I was feeling a bit down after Christmas, just struggling in general, and it was nice to feel my mood lift (if not my energy levels) and to feel genuine excitement about my birthday, getting some presents and going out to see friends i had not been able to see for months. As usual i was blown away by the kind and thoughtful messages, presents and the efforts people went to in order to make me feel special. It was really nice and a much needed break from the norm.

I did make it into town and went to an art gallery, saw my lovely friends, then also stayed in town for an early meal at a place which does food i can eat (rice and tofu based). I will never forget the taxi driver’s face when we asked him to drive me a very short distance along the road, he seemed to be unable to understand that, yes, we really do mean just along the road there… he didn’t refuse though, which was good. Although i became uncomfortable sitting in the restaurant with heavy blood-filled legs, i felt pretty good while out and it felt so nice I did not want to go home. I knew i had to but it felt like so long since i was out and about, i did not want it to end.

It almost seems easy when i am out and not feeling too bad and i find myself wondering why i don’t manage such things more often, until i remember the whole week of resisting the urge to leave the house (despite feeling quite stir-crazy at times) or do anything more than the basics, eating safely, the morning of lying in bed trying to get that extra boost of a nap, the day before of preparing myself, making sure i was bathed, hair washed etc so i did not have to do before i left, and the inevitable recovery time which would be just as long, all for three/four hours of being out.

This week since the trip out has been a hard one. I did not get a proper full recovery from that before other things happened. A decorator came the next morning which i had to get up for, after not sleeping well at all (as usual after doing something stimulating/exerting myself in any way). As it happened i managed to have a bath and go back to bed and sleep with my earplugs in while the decorator was here and when i woke up she was almost finished but still it was not as relaxed as i needed. My stomach was upset after the meal out, despite being so careful, which always saps my energy. Then there was the hospital appointment a couple of days later which should have been quick and easy, taxi in and out. Long story short, i looked on the website to find the appropriate entrance but it was incorrect and i did not ask for a wheelchair transit as i did not know how far it was (thought i was ok and receptionist made it sound like not too far) and walked far too far. Had a POTS episode (didn’t actually pass out but got to the department in a bad state, could hardly stand/breathe/talk) had the very quick appointment  after recovering a while in the waiting room and then went home. That evening i felt awful and i am still recovering from that. I also had to pop out briefly with my partner on Friday, she drove me only ten minutes each way but i ended up sitting in the car for 3/4 hour and although it was no exertion and i was relaxed and warm enough, it just sapped that little bit of energy i had left away… Last night i could hardly function and the tv was too much for me even really quiet so i was in bed from early evening and only just got up properly about 16 hours later. I have slept a lot so i hope i am ok now for my dentist appointment tomorrow… very tempted to cancel but i really need to go, it is overdue.

There is more plastering/decorating happening in the next couple of weeks but i won’t be alone with them so hopefully i can ignore it mostly. I hope things calm down a bit as i hate getting myself into that really bad state by overdoing it. It is distressing to feel so ill and incapable of simple things (like holding a mug without dropping it – it bounced luckily). I have felt quite emotional and i think that for me is one of the main benefits of pacing well, it that i can avoid burning out completely and feeling so helpless. When i do very little i can still feel pretty bad, but it is different to the feeling of teetering on the edge of total meltdown… some little voice says, have i broken myself this time? Will i get over this crash this time? My usual level of functioning may not be great but it feels so different to that.

Well, i said i would go out of the house somehow to mark my birthday, and i did. We decided Saturday was the best day for a number of factors (weather forecast, likely traffic due to Newcastle v Sunderland football game on Sunday etc), but i woke up feeling very dodgy and my partner’s assessment that i looked “a bit pale”, when i looked in the mirror, was a hilarious understatement. (Good to see those low blood pressure tablets working… NOT!). So, we crossed off the most ambitious option which was to drive to Sunderland to the National Glass Centre (best done in daylight as never been before and it was already late morning) and i got back into bed. I managed a bath in the afternoon and booked a taxi for 4.15pm, as i was determined to do something out of the ordinary. We went to the Laing Art Gallery in town (Newcastle) to quickly (It closes at 5pm!) see Tracey Emin’s Seagulls. I was happy to find them near the entrance and there was a sofa to sit on while looking at them.

I am not really a fan of hers, but i am conceiving an arty project of my own about birds (I feel it may be customary not to talk about things before you even start them, and for good reason, but hey! i like to live on the edge), which have taken on a greater significance for me recently as my illness has been more severe, so i thought in the name of research i would see what a “proper artist” was doing… We did not stay long and really there was nothing more to see than looking at the picture on the website (see link above). What really struck me was that the seagulls, all made from the same cast so pretty much identical, looked more like PIGEONS! To me the beauty of a gull is in it’s crisp edges and it’s angular elegance in the air; these were all rounded and puffy looking… and to have the same words on each one as well? It could have been more interesting to my mind, but what do i know?

So anyway, we then took a short walk to a bar as we had an hour before the restaurant opened. Firstly the only seat we could get were high bar stools which wobbled precariously and were set next to a wobbly table and i felt all “at sea” and not good at all. I do best with a seat with a supportive back, but this was a whole new level of discomfort! Luckily some people moved and we got better seats and the lights were less in my eyes there too.

Then we took another short walk to the bus stop to get a bus down the hill to the quayside. We did not have long to wait and got to the restaurant no problem. The meal was nice. It was Indian food from the Kerala region. We enjoyed the starters more than the main in the end and it was nice and quiet with only one other table occupied when we arrived, although it did fill up by the time we left. We could have got a taxi to come to the restaurant to take us home but i wanted to walk along the river just a little as it is a long time since i was there, and it is nice at night. So we walked a little bit and got a taxi home from the taxi rank.

sage-being-32

 

 

quayside-321

When we got home i very quickly deteriorated and had to go and lie in bed for a while, which put a bit of a dampener on things (i walked into the bedroom and looked at the bed which i only left about 4 hours before and it looked like my enemy, which it does not usually) and i was disappointed, although i knew i had pushed my luck quite a lot considering the day started so badly.

I have slept most of today so far and i don’t feel too good now since writing this but i am glad we managed to go out, however much of an effort it can feel. I made my partner take some pictures of me (she refuses to have many taken of her although i did get one) to mark the occasion as otherwise i will probably forget what we did by next year, as my brain is not so good on that front at the moment!

All in all i did have a very good birthday, and what made it good were all the good wishes, cards and great presents people gave me. People have put so much thought into them and that touched me a lot and made me feel valued and special to them. I still have not even found homes for them all – yes i got that many!!! So thanks everyone, if you are reading this xx.

birthday-risotto-parsley-32

(Hmm cheesy, green & nice!)

Special thanks to my partner, who always tries so hard to give a sense of occasion even when i am feeling ill, and who made me a gorgeous parsley risotto on Wednesday for my birthday dinner even though she was dubious about the concept, but we both loved it after all!  She got me a digital photo frame, which i love despite never wanting one before i got it and is so nice to have on when i am just sitting quietly, and a love-at-first-sight wool top! Here i am wearing it. Me, aged 32…

new-jumper-321

Well, this week has not been good. I have not been really bad, but not well enough to do anything much for long. Some days have been as bad as ever, seeing a return of bad upper back pain and regular headaches among other things. I have had to sleep a lot and have just not felt much sparkle…

Yesterday i went to see the CFS specialist again. He suggested it may be the medication causing this down-turn as he says it is generally not well tolerated (The POTS specialist did not say this to me, who is right?). Up til then i was thinking maybe i was fighting the nasty virus my partner has had all week, but i take his point. Maybe i just didn’t want it to be that, but thinking about it, it makes sense. I have had more problems with temperature regulation again, including goosebumps when warm (particularly on my thighs) and cold feelings on my head when my body is warm. Also a difficulty getting warm, followed suddenly by being over-hot and sweating. Goosebumps is meant to be a side effect, paricularly on the scalp so it kind of follows.

I am going to give it another couple of weeks to see if things improve as my body gets used to the new dosage as it was three weeks before i was sure it was having a positive effect intially. If no better i will ring the hospital and see what they suggest. After the initial success, i don’t want to give up on midodrine too early.

Although i am not hideously ill, i feel pretty much as i have pre-medication which is disappointing. What seemed “normal” has now become “worse than expected” , as i got my hopes up, which is not a good way to see it mood-wise. But i am well practiced with patience and i am trying to just see what happens. I really want to go to a lecture on monday evening that the POTS specialist is giving, and it is my birthday during the week so would like to be able to do something outside the house next weekend to mark the occasion. What we attempt will depend how this week goes… my short-list is:

  • Lunch/afternoon tea at a fancy hotel/country mansion type place up the road (easy ten mins drive for my partner) where i have not been before
  • Go into town to the arts cinema, with optional meal out afterwards if stamina allows
  • Go to National Glass Centre in Sunderland – this is a very long shot and the meds would have to kick in big-time as it is quite a drive and would need to be pushed in wheelchair etc etc – but no point ruling it out til the time comes as I have wanted to go there for years and have never been. There is a really interesting-looking exhibition on called Beautifully Crafted (see above link).
  • Also in Sunderland are the Winter Gardens, which again i have not been to, but i could never do both things at once… it is winter though so must be a good time to visit 😉

Or i may have other inspiration in the week, who knows! I hope i can do something anyway… If not i could become old AND grumpy overnight!

Also, to throw a spanner in the works, my partner has been ill with a virus all week and is still not tip-top, so it will depend on how she is doing by then as well… fingers crossed… again!

ME/CFS Awareness

ME/CFS Awareness

Pages

February 2020
M T W T F S S
« Dec    
 12
3456789
10111213141516
17181920212223
242526272829